Today we have our annual follow-up with Orthopedics at Cincinnati Children’s. This will complete our round of follow-ups that run December to March. The only other appointments D will have until next December will be his therapy visits and any sick visits. Talk about an awesome milestone!

I am nervous about today. He will get x-rays of his feet to make sure that all the bones are still growing in the right direction and that we are using his “nite-nite shoes” properly to maintain the correction. I’m also going to have his Ortho surgeon check out the recommendations we have from his physical therapist so we can see what move she thinks we should make about his low tone and hypermobile joints. He’s getting around much better these days, but PT is worried about injury or too much stretching to his ankle ligaments without support now.

When prematurity first struck, I went into salvage mode. For a while, I was just slammed with hormones, with emotions, medical issues, insurance issues, and dealing with the rest of the world issues. Then the first year was medical thing after medical thing worse than the NICU for us. The second year was about growth. I found my groove. Things with D got exponentially better with the right medical and development team.

Recently, with D going to school two days a week, I have increased my work hours and started remembering that I love my job and I was really good at it. I am so thankful that they allowed me the flexibility both to bring him to work on occasion or work from home as needed. I didn’t have to make some hard choices my work was as great a support system as my family.

Now, I’m ready to get back to some things I had planned for during my medical leave that I put on hold. I’m investigating some Master degree programs that will allow me to continue my current work in higher education while possibly preparing me for involvement with curriculum development or even classroom training.

I feel more ME than I have in a long time, and I think that is as good for my family and its future as it is for me.

While checking out my newsfeed over my morning coffee, I came across this gem from Bar Bumpers.**

Says any parent with medical equipment or a unique kid.

**I asked permission from Bar Bumpers prior to posting.

We have always used the sleep sacks to keep Drake warm in his “nite-nite” shoes, but I absolutely love these. Bar Bumpers will custom embroider a bar bumper and shoe covers.

I should take a picture of our changing table, cradle, and crib to show the damage that is wrought on wooden furniture by a kicky baby with an large metal bar.

D in his “boots & bar” at 6 months actual.

I love the craftiness and the practicality of these sets, but the message of this one is what really stopped me in my tracks this morning.

Last summer, Drake was on his last 2 rounds of casting for his clubfoot correction just as we came out of RSV isolation post- NICU discharge. I was still in the fragile, guilty new preemie mom stage. We decided to go to a popular brunch restaurant early one morning. Of course, I felt like people were staring me down as I carried my newborn-sized infant with a hip to toe cast on his left leg. The looks you get make you feel like social services is going to jump out and grab your child any minute. After casting, the Ponseti correction method continues with 23/7 bracing for three months.

4th Cast Mother’s Day 2012

Ask, don’t stare, ladies and gentleman. Most parents are going to be willing to educate you if asked politely and having a good day.

I love these whimsical boot and bar covers. I really need to reach out and see if she’s willing to ship to the US.

A search term of “Mitchell brace” recently directed a visitor here. Sometimes my issues and his issues of prematurity overshadow Drake’s journey in his clubfoot treatment.

Our course in some ways has been very straightforward, and so far this first year has gone as well as can be expected. Our start in his treatment was a bit different due to the circumstances of his early birth.

From my research into this condition, a diagnosis is usually made sometime during ultrasounds that occur after 30 weeks. Because Drake was born at exactly 30 weeks, we did not receive the early diagnosis that allows parents the time to select a specialist and make a treatment plan.

On Day 2 of his NICU stay, I was waiting for my wheelchair ride to take me down to the NICU. I was starting to feel a bit clearer as the medicine used to unsuccessfully halt my early labor was leaving my system. Although still a bit shaky from the emergency c-section and unexpected birth of my son, as well as those fun hormones.

My husband and some of the grandparents had gone down to the NICU to see Drake and give me some privacy for my doctor’s rounds. Suddenly, I overheard “they don’t know what’s wrong with his foot yet, but they had a hard time straightening it for the footprints.”

Say what? I LOST IT.

My infant son who still had seriously high jaundice levels, who was still on CPAP, and who I hadn’t been able to TOUCH yet had something wrong with him. Not to mention other people knew about it, but I didn’t. My husband had to send everyone away to calm me down.

I have pictures of Drake that show his foot as it looked in the NICU prior to the stretching exercises that PT had us and his nurses doing with every diaper change (6-8 times daily) as part of his cares. For now, they still feel really intimate so I’m going to keep them private.

We didn’t receive a diagnosis of clubfoot until my discussion with PT just prior to his NICU discharge. We left with a referral for an Orthopedic surgeon, and instructions to continue his stretching exercises 6-8 times a day.

Drake is being treated by Cincinnati Children’s Orthopedic team under the Ponseti method of treatment. He received serial casting, heel tendon release, a final three week cast, and 23 hour/7 days week bracing. He’s now in the sleepy time only phase of treatment that will last until he’s 4 or 5.

He is in the John Mitchell Shoes with Ponseti Bar manufactured by MD Orthopedics. It’s the 3 buckle sandal type of shoe. As a wiggly 1 year old, he is much less fond of laying still for his shoes to be put on, which has led to a “Night Night shoe” song and a double team bedtime shoe routine.

There were a few things that were very hard for me during the casting phase.

1. Seeing my newborn in a cast. Even after the NICU, I sat in my car with him in his carseat and just cried after that first cast. I had to call my mama.

2. The looks from other people who realized my tiny infant was in a cast. Ask don’t stare people! That goes for any child with a medical condition. Ask POLITELY, and most parents will gladly educate you unless we are having a very bad sort of day.

3. Soaking that thing off and keeping it wet during the hour drive to the doctor’s office!

The following are the resources I use to gain knowledge about his treatment and support from other parents. I hope this helps other parents on their journey with this congenital birth defect.

Ponseti International – Named for Dr. Ponseti who developed this treatment, and trains medical professionals worldwide

No Surgery for Clubfoot Parent Yahoo Group To discuss non-surgical methods of treating clubfoot (also known as Talipes), but specifically the Ponseti Method. We are here to get the word out and to support each other through the various stages of correction.

Clubfoot Shoe Exchange (a facebook group network of US parents who share gently used shoes if insurance refuses payment for these medically necessary AFO’s)

Now our real journey begins. Drake was fitted for his Mitchell shoes with Ponseti bar brace today. This has been the fussiest I have ever seen my quiet preemie.

I knew that the coming years of getting this corrected would probably be a bit of a struggle. I’m so thankful that this is a correctable issue, but I’m so sad that it’s one Drake will be fighting for the next 5 years.

So far today, Mommy has

1. Inserted the bar backwards and cried as my baby cried

2. Put the shoes on the wrong feet

3. Felt my son snuggle up to me for comfort despite all I’ve put him through

And number 3. That’s the reason all of this is possible.

The Yahoo group nosurgery4clubfoot has been a real comfort to me today.

Please God give my husband and I the strength to do this for our son. Help us to remain vigilante and compliant to the best care plan for him.

We won’t talk about the offhand comment about his brace making him look like Forrest Gump. It made my heart hurt for him, and it made me so, so glad that we will hopefully be through this before he has to be too much in the world without Mommy & Daddy.